A diagnosis is likely to be a shock. We provide practical information and emotional support to help you make sense of the news
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Newly diagnosed

 

Have you been diagnosed?

If you have just received a diagnosis of a muscle-wasting condition, whether you suspected it or not, it’s likely to be a huge shock to you.

When you are first diagnosed it can be difficult to take in what it means for you, your family, friends and colleagues. Make sure that you take your time to gather information about your condition. There are more than 60 different types of muscle-wasting conditions and they all affect people differently. You will then need to start making contact with the people who will be involved in your longer term care.

For more information on any of the issues raised below, please contact us:

0800 652 6352 (freephone)
info@muscular-dystrophy.org


You may find the following suggestions helpful to consider:

make contact

with all those involved in your care - for example your doctor or neuromuscular consultant. This will help you understand how your condition will affect you. Ask about what support you will need from family and friends, and who else is available to offer information and advice.

gather information 

if you've been diagnosed as an adult, you can order a free copy of the Adult Self-Management Pack. Designed especially for people who have been diagnosed as an adult, it contains essential information about living with muscle disease, and includes:

  • a small folder containing a diary, address book and medical alert card - designed to be easily carried around with you
  • an A4 folder, containing 36 fact sheets on a range of medical and daily living issues
for more information

See our About muscle-wasting conditions section for more answers to a range of questions you might have, and our Care and Support section for further information on our services for families affected by muscle-wasting conditions.

We also run sessions to help individuals feel more in control of their own condition- Please see our Living with MD days page for further information.